Lost and looking for suggestions

HI Jyo

That's a tricky one but great that he still feels motivated to do something. 

Not really too sure what to suggest to help here.  I had the opposite issue with G- I couldn't keep him in. He would disappear for walks for hours and Lord knows who he was talking to as he could never tell me when he came home. That brought its own challenges.

Are there any local groups he could join? My reason for asking is that our local hospice invited G to join their "My Life"   group which met weekly and was all folk around his age in a similar situation. He refused to go as he never wanted to think about his GBM and refused to talk about it. Perhaps there's a similar group in your area that might fit the bill here. Maybe worth a chat to your GP too to see if they can suggest any community groups.

Sending love and light and hugs

Wee Me xx

Thanks Wee Me. 

Its  a bit tricky. He is motivated but unfortunately doesnt have the energy to walk and he is not able to communicate properly. His cognitive skills are affected. So not able to articulate what he wants to say, difficulty in understanding etc. 

I was looking for a local group. I looked in McMillan site for coffee mornings or something in that line but couldnt find anything. I will check with GP next week. We also have an appointment with Onco on Monday. I will check with them as well. 

Yes, I think asking around is the best bet. My wife started doing some pottery classes and the local cancer support centre has an art group she could go to. She's now beyond all that but I really sympathise as it is lonely. She has lots of friends but they all work and have kids and busy lives etc.

I think I've now reached the point of having to quit work so will be able to try and get her out while she can.

Hope you manage to find something suitable 

Hi Jyo

I understand your situation. Mine was quite similar in that I was working from home so nearby but not with him.

Before Gbm my husband loved spending hours discovering new music, reading, and looking after the family and had such a questioning mind, originality and independence. Gbm took that away so the day was longer, he couldn't read or download music or even want to. He knew and had studied so much about psychology but it couldn't help him or he just didn't want to accept in the end

Finding  help with the psychological acceptance was also difficult to find in the medical profession . I think the practical medical side is more immediate.

The voluntary idea is nice. May be you can try also the inverse. I live near Barcelona, and got a red cross volunteer to visit my husband just to chat.  

I think just find people that can come over when your husband is awake, friends he trusts, or someone who looks up to him. 

You can see in my profile I was working. It kept normality, but I didn't get warning from the doctors that he was about to die. They were still giving him avastin, and said if that didn't go well, then it would be 3 months.

Reading how others cope will give you ideas and support.

It's quite traumatic and surreal

 On this forum I know others have lived the same awfulness.

You just live it, and try to do your best